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    WENDYJM4   168,913
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30th August 2013

Friday, August 30, 2013

Update on yesterday's blog.

I am confused and will now explain.

I stated the things he said to me, used words like maximum life expectancy of 5 years. Would not see 60. Discussed about option 2 and when he said up to 10 years I said that is a lot longer than the 5 years you just talked about and he said "yes".

This morning I rang and spoke to a women from the home dialysis centre in Adelaide, I have had a few phone calls from her and wanted to be kept in the loop.
Well I told what I had been told, she was really disgusted as the life expectancy has increased by many years now as there have been so many improvements. She said she would ring the Neph and sort all of this out. Rang me back after about 15 minutes and told me that the Neph stated that I have misunderstood him. It is not what he said but he also said that he feels terrible about this. I told her again what he said and she commented that she does believe me.

Why did he ring up and leave a message re the trial and he also rang the surgeon and spoke to him about trial and said the same thing as the 5 years.

She advised me to get the kidney out as this can spread at any time and I will have many years of life on dialysis.

I am really disappointed because I know what he said. I am not that dumb to misunderstand what he had said.

now it is all up in the air again and I really don't know what way to go.

I have even spoken to my local G.P. and told him what has happened and his answer was " Dr. Carroll does not usually make those mistakes" and he will wait for the letter from him, which takes approximately 2 weeks. This is not going to help me as I go to the surgeon in just over 1 week.

I admit now I am confused LOL.

  Member Comments About This Blog Post:

MOTLEM 8/30/2013 8:29PM

    Wow, certainly a lot of confusion there, for sure!!

This is such an important 'forward' in your life, Wendy, so pray you make the right decision.

Sending heaps of love and light you way. Keep us informed. emoticon

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FELINEBETTER 8/30/2013 3:31PM

    OMG! I hate to hear things like this!!! First of all - drs are human and make mistakes too. The difference between them and us is that they seldom will admit anything for fear of lawsuits! That being said -- I really hope there is some way you can get in touch with the nephrologist again. The nurse mentioned that as well as saying you misunderstood him, he said he felt bad. If he feels bad about this "misunderstanding" -- then he should be willing to take your call. I might also ask the pharmacist to double check with the dr and the dosage. If you lose too much fluid too fast -- that could have dire results too.

Please look after Wendy here. I'm pulling for you! emoticon

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APED7969 8/30/2013 9:38AM

    That is unfortunate there is any confusion about such important information. I hope you get it cleared up soon. Meanwhile there are a lot of websites available regarding kidney cancer and dialysis, maybe it is worth checking them out if you haven't already? There seems to be a lot of them that suggest 5-8 years as average time but lots of stories from people who have been on dialysis for 20+ years. I'd be very scared of the cancer spreading as tumours can metastasise to many locations and sometimes they aren't always easy to pick up, especially some of the more uncommon locations. While it would be good to keep an eye on the tumour to ensure it isn't growing it, lack of growth doesn't necessarily mean it isn't spreading.

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1CRAZYDOG 8/30/2013 9:03AM

    Hugs and prayers. I don't blame you for being confused! I am sure you were paying attention1 I think having a dead brain day is true BUT that doesn't help you either!!!!

I am sorry you have to wait 2 weeks. That would be excruciating. HUGS and prayers. I would definitely see if you could talk with the nephrologist again and sort things out!

So sorry your going thru this. It's disgusting!

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SUSIEPH1 8/30/2013 6:56AM

    I so agree love .. I think you should check with the Specialist about the size of the dose prescribed . Sounds to much to me ..
Love you my friend ..
emoticon emoticon Will be sending healing thoughts and vibes your way ..
Susie xx

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WENDYJM4 8/30/2013 6:43AM

    another thing is that he finally put me on fluid tablets, 2 in morning and 2 at lunch time. When I received the tablets I was asked if I have taken them before I said "no" and when the Pharmacist checked out what the label I was told it is a very high dose. He was a bit concerned. My local G.P said the same thing that it is a high dose and that I will be losing weight. Don't mind the losing weight part but is this going to cause more damage.

I think the Neph was having a dead brain day LOL.

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GOANNA2 8/30/2013 6:40AM

    I agree with Nola too Wendy. How very unprofessional.
It doesn't take that long to get from one doctor to another.
hang in there sweetie and I hope you get some answers
soon. And, no, you are not the one who misunderstood.
How thoughtless of that nephrologist is all I can say.
emoticon emoticon

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JAYDEE1211 8/30/2013 5:08AM

    Gosh. I can see why you are confused. Hang in there. emoticon

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SUSIEPH1 8/30/2013 5:02AM

    Hi Wendy Love,
I agree with Nola .. This is all taking to long to sort out especially in this day and age...
also most unprofessional to have conflicting reports ..
Thinking of you my lovely Girl .. Much Love Susie ... emoticon emoticon

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RDEE22 8/30/2013 4:38AM

    I can't believe that it takes 2 weeks to get a communication between a specialist and your Dr. What happened to email and fax's?
I hope they sort it out soon for you. You heard what you heard, so don't doubt yourself. Hang in there!!!
You are the emoticon

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